The Unseen Battle: Living with an Invisible Disability

I spend my days helping others reclaim their health. But if people don’t know me, they don’t see how hard I have to work to do the same for myself every single day. Even if they know me, it’s easy to forget. The work I’ve done has kept me in remission, so I rarely present symptoms. If I do have symptoms, I often maintain my capacity. Having a chronic illness can be an “invisible disability,” with no visible signs of physical limitations.

But just because symptoms are unseen, doesn’t mean you should feel unseen…

Most people don't know the time & effort it takes to live with a chronic illness, and that's part of the struggle. Not just the physical limitations but the emotional and psychological weight of having a condition that others often don’t understand.

When I was first diagnosed and my symptoms were out of control, people noticed. I went from being a high-capacity person who could be counted on at work and in relationships, to being bed-ridden and spontaneously at Urgent Care. And when I got on medications, I may have seemed fine on the outside, but inside I was struggling just to get through a day. Things I used to do without a second thought, became battles because of my physical limits, medication side effects. And there were foods I used to enjoy and activities I used to do with friends that I cut out of my life. Not because I wanted to, but because I couldn’t enjoy those things without having terrible symptoms flare up. My physical, mental, & emotional health were tanking; and very few people could actually see or understand what I was going through.

That’s the paradox of an invisible disability. You don't look sick, so people don't understand why you're struggling. And when you try to explain, it can feel hard to do so in a way that makes sense to others. So eventually, you don’t explain, you just push through it and hope the pain, fatigue, and embarrassment pass. But they don’t. It felt like people expected the same “me” they always knew, but I didn’t feel like “me” anymore. The diseases and medications changed my soul. I felt like I a shell of myself, constantly disappointing others and missing out on the life I once had.

“That’s the paradox of an invisible disability. You don’t look sick, so people don’t understand why you’re struggling”

On top of that, it got harder to be vulnerable, to ask for something that it didn’t look like I needed. I’ve often been the one others come to for guidance and support, and I enjoy the opportunity to do so. But it can be difficult to trust others would want to do the same for me. And that mindset can lead to self-imposed isolation. I have an incredibly supportive network of family & friends. But when I don’t talk about my condition because I’m either in remission or I don’t want to inconvenience them, they can be surprised when symptoms flare-up. And their “surprise” can sometimes feel like they “forgot” an important piece of what I live with every day.

So what do I do with all this? How do I navigate not only the physical symptoms of my invisible disability, but the mental & emotional symptoms that come with it as well? There are a few things that have helped…

1. A holistic approach to addressing my physical symptoms.

“...while the work & mental energy I invest may be invisible to others; most of my symptoms are invisible to me. And that’s worth it. ”

Discovering how nutritional impacts the body has been a game-changer for me. But so has the power of sleep, stress management, supplementation, movement, talk therapy, quality relationships, fun hobbies, and other modalities. I’ve learned how to support my body, which gives me the capacity to show up for my work, my family, and myself in a way I couldn't before. So while the work & mental energy I invest may be invisible to others; most of my symptoms are invisible to me. And that’s worth it.

2. A holistic approach to addressing my mental & emotional symptoms.

I’m a firm believer in the Mind-Body connection. Essentially, our thoughts, emotions, and psychological state can influence our physical well-being, and vice versa. Having a holistic approach to my physical health has done wonders, so why not take a holistic approach to my mental and emotional health also? So when I feel lonely or unseen, there’s not one single method I turn to: I reach out to a friend, I connect with my therapist, I call my family, I spend time in prayer & meditation, I journal, I go for a walk, I throw on some music and move my body, I play with my kids, I eat a treat that won’t flare me up. There’s a lot I can do to help me feel grounded in the truth that I am worthy of love and care and being seen.

3. I talk about my symptoms.

This one is still uncomfortable for me, but I’m getting better at it. Even though I experience far fewer symptoms than I used to; I occasionally have tough days. Days when my body doesn’t cooperate, when pain flares up unexpectedly, when I compare my life now to my life before, when I daydream about how my life would be different if I didn’t have to invest so much to take care of myself. And when those moments come, it helps to find a few trusted folks that I can talk to about how I’m really feeling. Most people still get the high-functioning, typical “me”, but I have a few folks who see me when I’m at my worst. And although that’s vulnerable, it’s valuable. It allows me to be authentic, and it allows others to get closer to me. Because the truth is, this version of who I am right now, with these visible and invisible disabilities, is “the real me”. And even though I rarely have flare-ups and rarely have debilitating symptoms, there’s still a lot that goes into being this version of “me”. Yes, this version of me is different that the one others knew. But this version of me is worth being seen and known and loved; just as I am.

“Even if you are in the middle of a flare and struggling to do everyday simple tasks, even if you miss the person you used to be, even if no one can see the symptoms you have or the work you are doing to feel better; you are not alone.”

And I want to extend that same message to anyone reading this who is dealing with an invisible disability — who you are right now is worth being seen, and known, and loved. I understand the struggle of pushing through days when you feel like no one truly understands the weight you’re carrying. I know what it’s like to want to ask for help but not know how, or to feel like you’re a burden. Even if you are in the middle of a flare and struggling to do everyday simple tasks, even if you miss the person you used to be, even if no one can see the symptoms you have or the work you are doing to feel better; you are not alone. Wherever you are at in your battle with chronic illness, you are not alone. You are worth being seen, and I would be honored to walk alongside you on your health journey, just as I have walked alongside so many others, to help you feel seen and to find greater health, greater freedom, and greater connection. Not by waving a magic wand and becoming the person you used to be before. But by choosing to nourish the body, mind, and soul of who you are right now.

You deserve to be seen and you deserve to be supported like that.